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Lupus hair loss - satin pillowcase, anyone?

Well, it's arrived.

The hair loss I was expecting over the winter is officially here. I have now entered my fifth round of hair loss since I was diagnosed with lupus almost 14 years ago. I'm hopeful that this round won't rob me of every strand of hair on my head, but we'll just have to wait and see. So far, I'm just losing strands, not clumps, so I'm hopeful that it will be a slow and steady decline that stops before it's too noticeable. Until then, I'm going to take precautions.

1) I've stopped "washing" and started "patting" my hair clean. Forgoing a good head scrub in the shower definitely reduces the number of strands that come out on days that I wash my hair. It's always so disheartening to finger-comb conditioner through my hair, only to have a wad in my hand by the time I get to the ends. So to lighten the mood, I'll be forgoing the massage technique as directed on my product bottles, and simply go with the "pat and rinse" method. Strands, you can thank me later.

2) I've been drying my hair as infrequently as possible - again, because the number of strands that come out during the process is too alarming. So I'll be sporting the fresh-from-the-shower up 'do this summer. I've had to relinquish my oversized hair clips (which now slip out of my thinning hair), and have started using my smaller, daintier clips to create a swoop and go look. I blow out my bangs, throw on a pair of earrings, and everyone is spared. Particularly my precious hair.

3) I've started using a satin pillowcase. Believe it or not, this recommendation came directly from my dermatologist. I was using it even before the hair loss became significant, but I know it's helping. I recently changed the sheets on our bed, and put on a pair of high thread count cotton pillowcases that we used to use while the satins were in the wash. All it took was a nap and one night's sleep, and it was obvious the satin pillowcases help to keep my hair intact. I woke up both times to find strands all over my pillow. So out with the brushed cotton, in with the silky satin!

I knew that the hair loss was imminent - I had that familiar (yet dreaded) tingle on my scalp when I'd run my fingers through my hair, and I started finding strands of hair everywhere, particularly when I cooked (yuck!) and cleaned.

Now, the strands fall out all the time, but I'm hanging in there (as opposed to my strands, which decidedly are not.) No one can tell yet - except for Deirdre. We were playing hair salon the other day (gently, so as not to disturb my hair, of course), and she kept picking up strands of hair and moving them off to the side. I said, "Is that my hair, sweetheart? Sorry about that", and she responded, "Oh no, that's my hair. I'm sure of it. Just look how blond it is."

You can see her striking head of blonde hair here. But during beauty parlor, you can have whatever color hair you want, and as much of it as you need!

And observations - I've been there with the pony tail! I just recently found that twisting my hair up in a clip (with the tail proofing out on top) helps to mask the thinness on top, much better than a pony. Ahhh...the tricks we learn... Take care!

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Sara Gorman was diagnosed with systemic lupus at the age of 26. Determined not to let lupus rewrite her plans for the future, she fought to maintain her demanding work schedule, busy social life, and invincible attitude. But after four years of running her body into the ground, she realized she was fighting life, not living it. Committed to working with the disease rather than against it, she made it her top priority to start living well, despite lupus.
Her book, "Despite Lupus: How to Live Well with a Chronic Illness", details the steps it took to reach that goal.
In 2012, Sara also launched Sara Gorman’s Pillbags – a line of fun, fashionable pill organizers. The stylish, fabric pillbags can be found at retail stores across the country, on Amazon.com, and on her website at www.pillfold.com.
A native of Indiana and graduate of the University of Notre Dame, Sara resides in Northern Virginia with her husband and two young daughters.